Jan 2008--Ain't it Great?

golfer779 · January 2008

Lady Jewels,

This will be old news to some, but I believe we have some new "sisters" who are joining our Jan chemo club, your fortunate to have found this great group of ladies to share with.

We have decided to order T-shirts, adding to our bond of "Sisters in Survival" mode. The following will help any of you who may want to order as well. This post was originally posted on Jan 8th.

Hey Ladies, okay, its the T'shirt thing again, but while this is fresh in my mind, here's the scoop ... and I'll need to get sizes if your interested. The best way to do this is to have you go to http://www.tunagraphics.com/ .

At the bottom left, it will say "click here" - you'll want to do this.

At the upper right side it will say search - enter S10C

A Hanes Silver for Her - Classic Fit Rib T should come up. Click on it.

For sizing, click on download Spec Sheet

As far as pricing, its quite reasonable, $11.74 for small - xlarge ,

$13.24 for xxlarge and $14.52 for xxxlarge. Note: the print shop suggested ordering one size larger than you would normally want due to shrinkage.

The set up for the screening is $35.00, I'd like to absorb that myself, its the least I can do for you gals being there!!!

If you did not see my posting earlier, the front will have "FUBC" on the left side, and the back will be JANUARY JEWELS (arched up) and SISTERS IN SURVIVAL (arched down) with the ribbon symbol in the middle. Color ordered will be black with hot pink lettering.

The sooner we could place the order the better, it will take between 2-3 weeks to get them printed.

If you would like Private Mail (PM) me with your sizing, I'll start a list, hopefully we could place the order by the end of the week or Monday at the latest. I'm hoping that you all will feel comfortable enough with disclosing your mailing address.

Once I place the order I'll let everyone know my address for payment.

Questions/concerns, let me know either via this post or by PM.

Thanks, Carol

I'll be checking in later in the day, need something in my tummy!!!!

Jenn51 · January 2008

Oh No! I just went back a page to look for something & found out I lost all of my in-progress post. Let's see if I can remember...

Billsgirl, Thanks for the positive post on SE. I start Thurs. & am a little anxious. Should I stock up on all the things you guys recommend or wait & see? My DH is legally blind & can't drive so an errand after the fact would mean calling in a favor.

Carol, Thanks for the repeat post on the shirts. I couldn't find the old one.

Good luck wig shopping everyone. My good friend since Jr.High, 16-year BC Survivor, is also my hair dresser. She got a wig catalog from a company she uses all the time & we picked out one already. Chose one a little longer than my style so she can trim it up. If I don't lose it all at once she will shave me when I get ugly. I also found really nice, inexpensive, pre-tied scarves on EBay. Search "Chemo Scarves". She also advised me to not get shiny, slick scarves. Says they come untied easy & like to slip off. Wouldn't that be a shock in the Wal-Mart line.

Can anyone calm my nerves on this port placement? It's tomorrow & I really anxious. They say they are only going to give me "conscious sedation". Now that's fine for a colonoscopy etc, but they are going to be cutting on me. I've done so well with everything else that has happened I can't understand why I'm so shook up over this, but I am.

Best wishes to you gals with sick Dads. (Found out I can't go back to get your names) My Daddy has been gone for 3 years now & I miss him like crazy. I would have to be worrying about him with all of this going on too. Special prayers for all of you.

I better go now, will check back later for hopefully some wise words. You gals are all so great but my Colts are about to play & I have to be there for them.

Hugs to all of you!

my3girls · January 2008

Jenn,

Just wanted to put your mind at ease when it comes to the port. When they put mine in, I was also in a twilight sleep. I hardly remember a thing about the surgery!! I remember seeing my doctors face once or twice and them talking and the next thing I knew, I was in recovery. I had no problems afterwards either. I just had a little pain, nothing a good pain killer would not help.

I have offered my wig to anyone who needs one. I have already found someone who could use it!! That makes me happy to be able to give back...everyone last year was so very good to me!

I wore scarves and hats allot, mostly only used my wig for work, or special occasions. I did use silk scarves, and other fabric scarves. They were given to me by my 2nd mom...so they were free. They worked out pretty well. It was fun matching my clothing with my scarves!! Just a little something to make you feel special, during this difficult time.

All the best to you tomorrow...I will keep you in my thoughts.

xoxo

Lisa

trudy · January 2008

Hi All. I came across this thread and the shoe fits. I start TC chemo 1/15, port going in tomorrow 1/14. DX: IDC, triple negative, 0/3nodes, Stage 1, Grade 3, modified radical left breast 11/29 due to widespread DCIS in addition to the 7mm IDC. Odd part was biopsy 10/4 showing focal vascular invasion, but path report after surgery showed no focal vascular invasion. I don't know what to think about that. Anybody else have a discrepency like this? Sorry to be joining the group, but very happy to have somebody to 'dump' on !!' Trudy

wvgirl · January 2008

Just checking in for a quick catch up. Had a pretty good weekend. Dh took me out for dinner and bought me a new cast iron cooking pot. Smile Funny thing he said hey this pot looks like Chery Ray's the chef on TV LOL I think I might have did a little too much yesterday. Have been really tired today.

Kimberly Thank you for the information about the port. Next Friday I am will insist on having blood draw from my arm. I hope your doing better and them nasty SE's stat leaving you alone. About the constipation a friend told me of a tea to try called Smooth Moooth it is sold at Natural Health Food stores. I ask my nutritionist she said it would be fine to try it.

Vettegal , Julie Sorry your having a rough time --Well wishes are being sent your way

D1 Thanks for the info on hair loss I am on day 9 and counting. My hair is starting to get and feel like wire. Hope you wig shopping was a success.

Dana thank you for sharing your story with us. The patients are blessed to have you there for them.

Jenn51 I had my port put in Dec 27 I was also given the twilight . I do not remember anything about the surgery. The nurse said they woke me a couple times and I talked to them but I remember nothing(a good thing) Surgery took about an hour.

Take care everyone ... Laughing My 2nd cheno round will be Jan 25

KathyL · January 2008

Hi Jewels! I'm baaaaack! Missed you all this weekend, but it was good to see my dad. He is doing fabulously (is that a word??) and hopes to go home Monday or Tuesday. He's weak, but who wouldn't be after heart bypass? Seeing him put my mind at ease and I'm about as ready as I can be for this week (my start).

So my shout outs:

Vettegal: read your post and am so sorry to hear how crappy you've been feeling. One positive to all the negative-- maybe in some ways it's better to get all the illness out now vs. during chemo. At least you don't have both at the same time. I hope you know what I mean and don't take that the wrong way. Feel better soon!

Welcome Trudy! How many cycles of TC are you doing and how far apart are they? I'm the "secretary" here and record a lot of stuff. D1 will also post you at the start of the thread. Crummy sisterhood to join (BC), but this group is fantastic and will pull you through.

D1: See above (new member). Plus, check with your insurance about wigs' coverage. Someone else mentioned this I think, too. Anyway, my insurance would give me $500 for a wig if I went "in-network". The catch is "in-network" (finding a place can be hard, I was lucky and had a few to choose from), and only one wig per year... but it helped. The place I got my wigs submitted everything to my insurance for me, I just had to give them my doctor's prescription. I paid for the cheaper one myslef, but could claim it on my health flexible spending account (pre-tax money). Hats, turbans, scarves are not covered by anything that I've found. My health FSA account won't even let me claim them. I think it's a little crazy b/c who would walk around bald in the winter without at least a hat-- I think it's pretty much a medical necessity unless insurance wants to cover us getting frostbite or ill!!!

Billsgirl: glad to hear you are doing well with SEs. Way to go! Also great news about BRCA-

SIS Kimberly: Have you tried Miralax for the constipation? It's over the counter, but works really well and doesn't taste bad. I used to prescribe it all the time for my patients (kids-- what picker clientele? And they all took it.). Now it's no longer prescription. I have it in my arsenal in case Sennakot-S and fiber don't cut it for me. If you can find it, the dose is one capful per day (17 grams) dissolved in 6-8 ounces of fluid (any liquid; but water or juice seems best). Good luck and here's hoping your GI tract gets a little happier this coming week Smile

TexRN: Thanks for your hair story. I don't know why, but i think that will be a tough moment for me. Reading your post helps.

Julie: Yell OMG! As Deb said-- call your doc!!! You need some IV fluids and some nice antiemetic like Emend or Aloxi. The nurse in me is just wanting to come hook you up myself if I could! At least your docs should know and be watching you very closely. No one should be puking as long as you've had to suffer. Insist on some action! Then let us know later how you are and what worked Wink

Jenn51: Good luck tomorrow with your port. I am getting mine, too and will be thinking of you. I'm more nervous about them sticking it for my chemo on Wednesday but I understand your apprehension. The twilight anesthesia is nice and you probably won't even remember the whole ordeal. If you're really nervous, ask them for some Xanax IV once they get your IV in-- it's good stuff and calms the nerves.

Ok so up this week:

Monday: port insertions for me, Jenn51, and Trudy (newest Jewel).

Tuesday: chemo round #1 for Trudy

Wednesday: chemo round #1 for me, Camazur, CarolC. chemo round #2 for D1

Thursday: chemo round #1 for sista2 and Jenn51, #2 for AZ Donna

Friday: chemo round #2 for TexRN

I hope I haven't missed anyone. Please update me on dates for other up-coming surgeries or chemo rounds past your first one. I don't have a lot of these. See ya tomorrow. Keep going strong Jewels, we're halfway through the month this week!!

RN2teach · January 2008

Hi ladies,

I'm new to this site and very glad to have found you all. From "wandering around" the boards, it looks like I have plenty of company on my new journey. I have my port inserted tomorrow like Jenn, Trudy and KathyL. I start chemo Friday. I haven't read this whole thread yet, but will try to catch up soon and get to know everyone. In the meantime, I'll be praying for you all collectively as the January Jewels!

SISKimberly · January 2008

Good evening Jewels-

Today was a much better day...even better than yesterday.

I agree...my body knows what it needs and just does tells me...sleep...don't

eat that...you want to eat this....and drink some more water while

you're at it!

I did 3 loads of laundry yesterday and emptied the dishwasher, and made my own breakfast and lunch yesterday. I also got in a VitD walk.

Today, Greg made me pancakes and eggs for breakfast and leftover soup for lunch.

I know I am so lucky to have this man of mine.

Anyway, we went out for a bit, and I thought I really want to try a small decaf gingerbread latte...something with more consistency than water... and of course, you can't have a coffee without a little treat. I was just so thrilled that I actually wanted to eat today...of course nothing has much taste...sigh :-(

I so wanted to taste my piece of Pumpkin Loaf and decaf from Starbucks! Not happening...

Oh well...I guess this will keep me from eating foods that aren't good for me....why bother if you can't taste them?

Vettagal and Julie- I am so sorry that you are so sick!!!! And here I'm whining about a little nausea, constipation, and gaseous bloat that made me feel like I'd explode...take care of yourselves...especially you Julie...you need to call as CathyCa said...you have to keep from getting dehydrated.

D1/OLE- Can't wait to hear how the wig shopping went...you crack me up as billsgirl stated...thank you for your humor. And I'm all for evicting SE's...let's pass those notices all around shall we?

Billsgirl-I am so glad you've had a 'good' experience so far with round #1...well except for the insurance thing. My SEs didn't really kick in until day 3 and 4...but that doesn't mean you'll experience it the same way or in the same time frame. WhooHoo on the BRCA test. Still waiting for my Dad's and sister's results.

Dana-You sweet thing, you. Your words are plenty! I'm so glad you had a good day at work...being a positive influence is magical isn't it? I agree with you on not having time for this...but look at you just workin' it, girl!

As for the food thing...let your friends cook...there are lots of recipes online they could try out for you. Eat what your stomach can tolerate.

Jan. 22 is only 9 days away...and if they cancel your appt. again...I will personally put on my teacher voice and send your onc to the principal's office for disrespectful behavior.

Theresa- so looks like Deb and I have only a little more time before the hair takes it's last curtain call for this show, eh? Are you ready, Deb? I'm not...I am going to look at hats and things on Thursday with my twin. I have an expander fill-up, so that seems like a good time to do it. I will call them first D1/OLEand make sure I don't need an appt.

SIS Kimberly

Donna1955 · January 2008

JJ,

HI just checking in with everyone. Little anxious for this week, blood draw on Wednesday, Chemo ac on Thursday and that lovely neuslasta shot (think thats how you spell it) and since thursday is day 14 of my last chemo figure I am getting down to the wire for my Hair. I will start watch for the rodents in my drain, I already have a wig bought and waiting, the shop will shave my head when ready then cut the bangs on wig to the length I want them. Welcome to all new JJ

Azdonna

wvgirl · January 2008

RN2Tech

Good luck tomorrow on your port and 1st chem on Friday.

I see you are also from West Virginia where at ? I live in Kingwood.

Jenn51 · January 2008

Thanks to everyone who had a good word on port placement. But now I'm really confused. Just got Sat. mail & note from Dr. says I'll be given a general?!??! Guess it is just one more wait & see.

Welcome Paula & Trudy. You couldn't have found a better group of gals. If you are scared & just need to complain they listen, they give good advise & they are full of love & prayers. I am so very thankful I found them myself.

Kathy, let's meet in our twilight zone tomorrow. I'm hoping this worry is for nothing as was the worry about pulling the tube. I was really nervous about that & didn't even feel it come out. In those cases I'm very happy to say I was wrong!!!

You all are in my prayers tonight. I hope I feel like posting when I get home tomorrow. Sweet dreams Jewels

PS: Yes, I am in mourning for my Colts. It was a horrible game. Guess I'll root for the Packers now. One of my sons in Milwaukee is a BIG Packer Fan.

sista2 · January 2008

jenn51, kathyL and trudy - good luck with your ports tomorrow. i get mine wednesday. i'm not really worried about the actual surgery but i am feeling unnaturally apprehensive about getting it at all. i know with a year of tx, it's for the best but i am mentally resisting having this thing in me. don't want it. not sure where that feeling is coming from but i guess strange apprehensions are understandable considering what we are all facing. and then we are getting our first chemos so soon after. guess the incision doesn't need time to heal?? ugh.

and jenn, sorry about the colts. i was pulling for them too, can't believe they didn't do it at the end. but i'd really be torn if they ended up playing green bay cause i want to see favre win the big one again.

best to everyone with their surgeries and tx this week!

Donna1955 · January 2008

Jenn51,

They did my port under general, just had to stay a little longer at surgery center but I was glad because I am done being a big girl.....my port was sore for a couple days then felt weird for about a week or so but now doesn't bother me at all (had in installed Kiss on December 6th) I was glad to have it with all the crap they inserted into on Jan 3 (my first chemo) now I go again Jan 17, this week, so a really big week with chemo again and checking for rodents Cool

take care

Azdonna

Cathy-CA · January 2008

To all of you ladies getting ports tomorrow -- make sure you take it easy for a few days. I found that the muscle in my upper chest hurt for several days afterwards. I had my lumpectomy on my right breast, so had been doing things left-handed to not strain the incisions and had a hard time doing that after the port was put in. It's been almost two weeks now and things are pretty much back to normal, so hang in there.

Jenn51 · January 2008

Hi Sista, Are you in Indiana? I'm right outside of Indy on the East side. Last year when we played the Bears it was bad. A different son is an avid Bears Fan. The Colts are his 2nd team so it wasn't too bad but I wasn't ready to do it again this year with the Pack. I'm a little uneasy about the port too but I'm not fond of IV's. The guy that did my MUGA said after 2-3 uses the skin around the port scars up & you don't really feel the prick. I hope he's right. Seems to me that one spot could get really sore getting stuck all the time.

Cathy, thanks for the tip. Told them at work that Tues. is questionable. How many of you guys are still working thru chemo? I'm at a great place that will let me work as much or as little as I feel like. And I know it will depend on how hard the se hit me, but I just wondered.

Donna, thanks for the good word on your port. I know what you mean by being tired of being a big girl. Everyone keeps telling me I'm so strong when I really just want to find a corner & hide for a while. But I hate to disappoint anyone so I suck it up. But I think the dam is going to break one day real soon.

I'm off to bed. Have to be at the hosp. at 7:15 am tomorrow & I'm NOT an early riser. Blessings to you all.

Determined1 · January 2008

Oh my, I read thru posts this morning, but so much has changed! Not sure how I'm going to manage when I go MIA with my next round of se's!

First of all, a big yippee kayoo hurray to Billsgirl and the BRCA results!

And welcome to Trudy and Paula, there's always room for more facets to the Jewels.

SIS Kimberly--so glad your se's are a bit better. I'm impressed that you're doing chores around the house--that's a good sign. Don't worry, try the pumpkin loaf again in a few days, I'll bet you'll be able to taste it.

Carol--thanks for reposting the t-shirt info. How are you doing se-wise? WTF happened to the Seahawks????

I'm so glad your dad is doing better, KathyL. And you're amazing the way you're on top of the Jewel activity for the week. Thanks so much for your effort. It helps all of us (what are we going to do when you develop chemo brain??? Argh! I hate to even consider it!!)

Julie--Are you feeling better? I'm with everyone else--there HAS to be something they can give you for nausea. Please start bugging people in the morning, if you haven't already done so.

AZDonna--you sound like you're doing well. Good for you. You have less time than I to adjust for your next tx and I'm happy to hear that your head sounds like it's in the right place. Wait patiently for the rodents--the infestation is coming!!!

Hmmm. Rodents. Yep, there was a large city rat in the drain today. Didn't even know I had that much left! Speaking of rats, my hair looks downright ratty. I started wearing a do-rag in public today. I tied it in the back, but I'm kinda itching to try the tie on top, like Tupac. Not sure my kids will approve, tho. They want me to act my age sometimes. My hairdresser returns from her trip on Tuesday and will shave me either that evening (doesn't seem fair to ask her to do it right away--she'll have laundry to do) or Wednesday after my infusion (when I won't be able/want to drink). Such a dilemma.

I'm not sure what is the best approach to this hair fall out thing. If I had clippers (or wasn't too cheap to buy my own), I'd have shaved myself by now (honestly, the hair is FUGLY ugly). But the advantage to waiting is that I can pull this stuff out and maybe skip the whole mange look. It seems that once you shave, the stubbly bits are reluctant to come out, leaving mange. And since I'm so coyote ugly now (you know, I'd chew off my own arm to get away from myself!), I don't think I deserve any time in mange purgatory. Just my take.

Wig story. Well, since I waited till my hair was falling out (note to other Jewels--get your wig before you lose your hair--not sure what I was thinking, except maybe some denial???), the ladies at the wig shop weren't too excited to have me trying on everything in the store, leaving my "mark" on their merchandise. So, they did their best to choose a good color by holding hair up to my face and then they peppered me (and my family) with questions about the kind of hair I wanted and brought out 3 wigs. So I only tried on 3. That was a little disappointing, but the four of us (dh, college girl, 16yo and I) laughed our way through the experience. One of the ladies even came over and said she wanted to know why we were laughing so much! We didn't even know what we found so funny. It was good. They voted for hair much like what I had before my Katie Holmes 'do, except its a little lighter. I wanted to go a bit darker, but everyone in the shop thought it a bad idea since my skin is getting so sallow and pasty (can we go to tanning salons while we're in tx? I REALLY need a tan!).

So here's the lesson for everyone else--may I repeat? Get your wig before your hair falls out! I didn't realize that you don't just walk in, choose a wig off the shelf and leave. Oh no. My wig has to be re-tied (I think that's whats happening to it) because my head is so small. Yep, a pea brain here. I like to think it means less room for rocks. Bad news is that I don't get my new hair till Thursday. Guess I'll have a chance to tie that do-rag in the front...

Also bought two of those turban things with the long ties (geez, they were $25 each--I should've asked before I picked out two of them) and one of those knitted sleep caps (I can actually see myself wearing that bad boy quite a bit). I spent just under $600 for the whole shebang. I thought that was a lot, but I do live in an expensive area (DC), so maybe I should be happy. My dh had heard the wig was going to run over $1000, so he was relieved. Now I have to submit to insurance (part of the reason I waited was because I didn't have my wig rx till late last week and it turns out you have to buy first and then submit, the wig shops don't work like doc's offices--what was I thinking????).

Learn from my mistakes, Jewels. I'm in the early group for a reason--I'll make every mistake in the book and share it with you!

Good luck tomorrow to KathyL, Jenn51, Trudy and RN2teach with the port thing. Be sure to wear your usual bra so they know where the straps go and have an idea where the seat belt hits you so they can avoid that, if possible.

I'm always with my friends here, even when I'm not online. Stay well, gang.

Onward through the fog!

D1

Donna1955 · January 2008

Determined1

What a wonderful attitude you have sure helps me........I have no choice but be ready again this week, nasty stuff coming at me every two weeks but I will get thru this quicker.....I would say the first 3 days after I felt 20% but now I am back to 85% and hopefully 110% by thursday that way I will only go to 30% MAKE SENSE TO ME

HAVE A GREAT WEEK AND GOOD LUCK TO ALL THIS WEEK

Azdonna

deb102307 · January 2008

Wow, is there a lot going on. ((Hugs)) to those getting their port tomorrow. It really isn't as bad as the anticipation is. I was sore for about 4-5 days but I was awake for the whole procedure and the only thing that hurt was the lidocaine (burns like h***).

Vettegal and Julie - I really hope you are feeling better soon.

Kimberly - Glad to hear that you are feeling better. I can't believe how much better I feel today compared to friday and saturday. Appetite is better and not quite so achy. You did make me laugh talking about the hair. I though I had already said something but maybe not so here goes.....I lost my hair about 3 years ago due to some weird autoimmune disorder. Now I'm hoping that maybe the chemo will "trigger" it to grow back. Wouldn't that be a hoot?!? So I am already used to wearing a wig and doorags. A couple of good sources are Hobby Lobby or Michael's for bandanas and Paula Young for wigs. Once you are sized or even if not,( the size guide they use is pretty accurate), they are very reasonable and have a really good variety of selection. And they almost always have sales going on.

D1- I can never thank you enough for all the good recommendations and hints to survive all of this. You are the bomb!

It is the end of day 5 post treatment #1. My worst days were day 3 and 4 and it was fatigue, weakness and lack of appetite. If that is how each one goes, I can't really complain (I might whine some though). My next treatment is the 25th provided blood work ok. Going to try to work full days all week this week.

Off to bed and will check in again tomorrow. Sleep well Jewels.

RN2teach · January 2008

Thanks for the good wishes everyone.

D1- thanks for the wig advice. I see my radiation oncologist and have a MUGA scan Wednesday. I am going to try on wigs in between the 2 appointments.

WVGirl- I am in the southern part of the state in Danville (just south of Charleston). I go to David Lee Cancer Ctr at CAMC for treatment. Do you go to Morgantown for your treatment?

Good night, gem friends!

Paula

PAlady · January 2008

Hi Ladies,

I'd like to join your group. I am 42 years old and was diagnosed in October. I had a lumpectomy on November 15th. I just had my first round of chemo on January 4th. I am doing 4 rounds of cytoxan and taxotere. My second is scheduled for the 25th. I have had good and bad days so far, but it hasn't been as bad as I was anticipating.

I haven't had a chance to read through all of this thread, but glanced at a few regarding hair loss. I have been trying to be prepared for it (expecting it next weekend), but not sure that I will be. I ordered a wig from a wig shop here and haven't heard back, so will call her on Tuesday to find out what the deal is. I also ordered a couple from the tlc catalog and hated them! They just look so fake, so I am hoping the one I ordered from the shop looks a little more real. I also ordered a few turbans, which my husband thinks make me look too old, and a scarf, which I really liked. Have three boys and I think they are all a bit apprehensive about the whole thing.

I haven't had problems with fatigue at all, but actually the opposite. I don't seem to be able to sleep through the night. I'll wake after a few hours and it takes me forever to fall asleep again and then it seems to be all broken sleep.

I am also having problems with extremely dry nose and lips. I haven't been able to find any info online or in my books regarding this as a side effect. If anyone else has any tips on how to deal with this I'd appreciate it. For now I just keep using a saline spray and trying to drink my water.

I hope everyone has a good week.

vettegal · January 2008

Good morning Jewels-off to my look good feel better and then to sign my life away today at 1pm. will keep youposted on my dates and cocktail. feeling better, what a kick in the ass..couldn't even make it up the steps the other day..who thought breathing was so important!!!! Wink

KathyL · January 2008

Good morning Jewels! It's official-- I'm addicted to this site. I got up, figured I cn't eat or drink... so I might as well go online and check in! I haven't even showered yet. BUt I don't have my port surgery until noon and have to be at the surgicenter by 10:30... so I have time.

RN2teach: Welcome! You've read some of our posts so you know were cool Laughing . You are joining just in time for your week. Give me and D1 some more info to add... what type of chemo are you doing and how often are your rounds? I keep a list at home and D1 adds to the start of the thread. I, too, am a nurse. DanaC is currently in nursing school. What kind of nurse are you and are you stil working thru chemo? I am not-- way too much stress and germs (I work in peds as an NP).

SIS Kimberly: Glad to hear you are perking up! I knew you'd pull through it. Time for a poem about the SEs??? One with attitude would work

Sista2: I too am a little nervous about the port today. I think it is because there's really no turning back once it's in and it also kinda signals this is really happening.. physical proof, ya know? Step one is port, two is chemo... yikes! We'll make it though.

PAlady: Welcome to the gropu! Better late than never I say. Our thread is huge so you may not find all the stuff people said about dry mouth and lips. Try Biotene rinse and/or toothpaste. Supposed to work well-- I've stocked up for this week. Vaseline works well in the nose as does running a vaporizer/humidifier in your bedroom. Keep up on the fluids, too (you already know that one). How often are your chemo treatments and which cocktail are you doing...D1 and I will add it to our lists.

D1: Love your posts on the hair. You crack me up! About the list...I am thinking I am so "Type A", chemo-brain will not be able to break the barrier! At least I hope not or I'll go nuts. Maybe it will be my mental exercise to keep up on everything. We'll keep each other in check. OK, so today I added RN2teach and PAlady so far. I see we're up-to-date otherwise.

Gotta go shower and head off for the port. Yay-- can't wait to feel like I've been kicked in my nice new rack!

texrn · January 2008

Good Morning All!

Hope everyone's week is off to a good start.

I was hoping I'd feel closer to a 100% than I do. I don't know if it's from the cold I had last week - but I'm wiped out. I get short bursts of energy, then I crash in between. I'm not sleepy tired, just drained. my blood counts dip a little, but didn't drop dangerously low. Sometimes, when I'm full of energy, I feel guilty for not working during my treatments. My employer has been wonderful, but the disability insurance co. gave me a hard time, at first. They said that a lot of people w/ my same diagnosis, treatment, etc. work

through treatment - so, at first, they were only approving me from one doctor's appointment to the next. I finally explained to them the nature of my job ( of course, they never once asked me what kind of work I did ). I'm a critical care nurse, & I work 12 hour shifts - so between the stress & the germs, my onc & I didn't feel it was a good idea for me to work right now. They finally agreed & approved me through March. I think they made it unnecessarily difficult & stressful for me ( & I told them so ).

Anyway, enough griping....It feels good to be able to get this off my chest & tell people who can understand.

Hope it's a good week for all & that you all sail through your treatments w/ minimal, if any, se's. I have my second treatment on Friday & this time I'm prepared w/ an arsenal of drugs. My bathroom counter looks like a pharmacy. Sometimes I can't believe I have a days-of-the-week pill box.

For my dry lips & nose, I use Aquaphor, made by Eucerin. My children's pediatrician, & also their orthodontist, recommended it for

chapped lips, & the dry,cracked corners of the mouth.

Talk to you later........

Therese

Anonymous · January 2008

Good day ladies.

Feeling a little better from the last round of SEs. The worst for me seems to be being so dam sleepy, and I'm not sure if that is the chemo or all the anti-SE drugs. Anyway, I'm feeling not so tired though I don't yet have my appetite back.

All the port ladies, try not to worry. The worse for me was actually the Fentanyl, made me feel so sick when I woke up. It took hours before I was well enough to leave that place. I'll never let them give me that again. The incision and stuff are no big deal. I had an "awareness" of the catheter line under my skin for a week or two, felt weird, but I seem to have gotten used to that.

Hair's coming out left and right. Took scissors to what was left and it's all pretty short now (<1/2"), have to figure out how to get rid of the rest of it. (Will the Lady Remington work?)

Hang in there girls, hope all is going well with everyone.

wvgirl · January 2008

Hello Jewles,

I just can't stay away. Had to get on during lunch to check up on everything.

D1 I just love hearing your stories. You always put a smile on my face. Laughing

Paula-I do go to Morgantown to the Cancer Center there. I have a great Onc (Jame Abraham) and his nurse is very sweet ,and kind.

I hope all who are getting ports this week do well.

golfer779 · January 2008

Just checking in from work myself, its hard to stay away. Don't have time to read everyone's posts just yet, but hoping that you all are doing as well.

Carol

Determined1 · January 2008

I'm thinking about our port gang. Anxious to hear all of the re-"ports."

Hope Vettegal is having fun at the look good seminar. Hopefully, you weren't too stressed about the thought of signing your life away afterward to enjoy it. And glad you're back among the breathing!

PALady--welcome to our group! You and I are on the same tx. The nose and lip thing is really annoying, isn't it? My nose was so dry it would bleed every time I blew my nose. Yuck. It did clear up about 5-6 days ago, so you are probably near the end of that se for this round. I found out that you can put A&D Ointment on a Q-tip and gently coat the inside of your nostrils to help with the dryness there. I'm going to try it with my next round. For the lips, I just kept Burts Bees nearby and coated and recoated my lips. I also found that some lipstick was helpful as it would stay on (and gave me some color when I was feeling like sh*t.) I also had dryness issues with my eyes (when they weren't watering like mad--how's that for a contradiction?), but just took out my contacts and have been wearing glasses, which makes that se manageable. Have your hands started to itch, yet? Mine were making me totally crazy for about 3 days (used Sarna anti-itch lotion, which helped a little). This carried on till my hair starting really coming out, then I was distracted by the hair and suddenly realized the hand thing passed. It's all so fun, isn't it? Anyway, welcome. Feel free to share whatever--it's all good (to steal Vettegal's line).

Therese--I loved your description of your energy level--that's exactly how I feel! I have bursts, then a lull. And I like the use of the word "drained," cuz I'm not really tired as much as drained. Your words will help me when I see my onc on Wed. before my tx. Thanks. Oh, and I'm glad you figured out the work issue. I was also happy to see that you let the ins. co. know they were making things harder for you than they needed to be. So many of us don't express that dissatisfaction and then the behavior continues. Kudos to you for giving it to them straight.

LJ13--you'll probably clog the Lady Remington! I'm still sporting the decrepit old person look (you'll note it went from just old person to decrepit) because I don't have access to a shaver. Had to figure out how to put on my first turban today as I CANNOT go out in public looking like this. Even I would be embarrassed! Good news is I have about 10 strands of hair hanging out the bottom of the turban, so it's looking more like a fashion statement, than a bald head covering. Maybe I'll hang on to those 10 hairs and put them on a piece of tape so I can affix them to my head before I put on my head covering... Hang in there with the tiredness--can we have Red Bulls to counteract that???

I'm trying to use my energy bursts to good ends today. I cleaned the stove and sink and vacuumed upstairs. I felt pooped after that (also went to the gym this a.m. and took my shower--some days that's enough to lay me out on the sofa for a while!). I'm going to try to vacuum the living level today and see if I can swing by the curtain shop to get more fabric swatches (our fam rm/kitchen curtains are literally falling off the walls. It was going to be my fall project to paint those rooms and get new curtains, but I got distracted. Now I'm going to hire a painter!). Tomorrow I'll do a laundry marathon and I really want to get a mani/pedi (can we do that? I keep getting contradictory advice on that. I don't do it often, but it really makes me happy and I deserve to be really happy before Wednesday.). I'm also going to the gym again--one last hurrah!

Everyone with tx this week--don't forget to start your anti-nausea meds on schedule! I'd forgotten about them till today and dug them out from under the bathroom sink. Also, start drinking water--you want that poison to pass out of you! (Plus, for those of us doing this via IV, it helps to plump up the veins!)

Ugh. I sound like a mother. Time for me to go!

TTFN,

D1

deb102307 · January 2008

Just popping in to see what is going on. I'm thinking that they should fix it so you go through one round, find what days are your worst and then just put you in suspended animation for those days for all the other rounds. Sounds good to me.

I also discovered (remembered) that I still had a bucketful of pain meds from my surgery and so yesterday and today, I broke one in half (was originally prescribed 2 every 6 hours), and took those. Boy, it takes the edge off of the achy bones that come with the fatigue yet don't make me loopy.

Just my 2 cents worth.

Will see how everyone is doing later. So far, work is going ok for me.

(((((Jewels)))))

SISKimberly · January 2008

OMG Deb-I swear I just said something just like that...I said, "If we could just be put into a nice little comma for the duration of the 'bad days', I could so do this."

D1-I agree about the energy thing...today I feel pretty good and have big plans...I took a really long Vit D walk and want to sweep and vaccume and go to the store, and maybe even make dinner tonight...I'm thinking it's a bit over reaching, but I'll do what I can do.

Can you believe the gall of the Disability Insurance company to question a cancer patient's claim? Hello, not everyone has a job that is doable with chemo..,or an employer who will let them have that flexibility. Bravo for giving them a piece of your mind, Therese!

I'll work on an SE poem, Kathy...it will take a few days to collect my thoughts then let it settle and brew...I'll post as soon as it is done.

Good luck to all who have ports to put in, SE's to battle, hair...or the lack thereor... to contend with...appt's for test results or treatment plans...chemotini dates at Club Survivor...etc...

Got to run if I'm going to get this list started.

SIS Kimberly

vettegal · January 2008

Hello Jewels....here is my update...chemo cocktail is taxatore/cytoxan (tc) 4 treatments every 3 weeks starting the 25th on Jan. they are giving me some time to heal with my bronchitus/pnumonia..so i am headed in the right direction..doctor said iwas a cheerful as the first visit..well lets see, i am sick, coughing, the antibiotic gave me the diarrea(sp) oops..the steroids make me....weird!!!! glad to be back Cool

Jan 2008--Ain't it Great?

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